Batting for the Cure

To Steve in Montana and hello to all! *** PLEASE READ ***
I can help! I work for the ALS Association Evergreen Chapter (www.alsa-ec.org). Our Chapter covers Washington, Idaho, Montana, and Alaska and there are ALS Chapters all across the county to help assist patients and families with ALS. I'm located in Spokane, WA and we are currently trying to build our "Strike Out ALS" nights with baseball teams and we need all the volunteers we can get not only for our chapter but across the country to make this happen! We need people like you to help volunteer. Please contact me at jenniferh@alsa-ec.org for further information. I also lost my mom to ALS in Montana over 16 years ago so it is my passion to work on building our programs and services for ALS patients and finding a CURE!
Warmly,
Jennifer Hanson
Development Associate, The ALS Association Evergreen Chapter

Hello,
What is the best way to assist in making "July 4, 2009, ALS-Lou Gehrig Day?" happen? I have found a petiition online on the website http://www.petitiononline.com/122296/petition.html is this a good way to support the creation of this day? Do you suggest any other ways? I would like to help. Sue

I KNOW A DOCTOR THAT CAN HELP YOU DANCAMPBELLSR@AOL.COM

My wife Lisa Hess was diagnosed with ALS in January of 2007. Recently, my daughter started a petition online that will be sent to every Major and Minor League baseball team, asking them to back Michael's suggestion to make July 4th National ALS National ALS Awareness Day. Here is a link:
http://www.petitiononline.com/122296/petition.html
Please Stop by and sign up now.

I just wanted to add one additional comment regarding the prevalence/incidence of Lou Gehrig's disease. Basically, the government gets most of its data from death certificates. I have been a Hospice doctor, and I know that a person with ALS may have "Respiratory Failure", "Choking", or some other diagnosis/condition listed on a death certificate. In those cases, these persons are not included in the disease registry. This causes the disease to appear less common than it actually is.
Kathryn Price, M.D.
oscarsmom@comcast.net

Mr. Michae Goldsmith is a brave and courageous soul; and I wish him a long and happy life. My husband has Lou Gehrig's disease (he became ill four months after our marriage 8 years ago)., and he is now totally paralyzed from the neck down. Two years later my Mother also developed Lou Gehrig's, but she only survived until 2004. (.And, no, i didn't marry my cousin.)

This terrible disease is much more common than people think. It actually is just as prevalent as Multiple Sclerosis--it is just that, since the life expectancy is shorter, there are fewer living people at any one time with the diagnosis. Another reason it is thought to be uncommon is that most doctors don't want to diagnose someone with "a death sentence". My husband was originally diagnosed with benign fasciculation syndrome, and my Mother with post-polio syndrome.

We know that this disease is more prevalent among soccer players, professional golfers, veterans of the first gulf war and, yes, baseball players. What do these people have in common? In my opinion, as a doctor, I believe the common culprit is the widespread pesticide (and herbicide) use.

Like many people with ALS (Motor Neurone Disease in many parts of the world), my husband tried Acupuncture, Chinese and Ayruvedic Herbs, IV glutathione, extreme dietary regimes, tetracycline, Co-Q-10, etc. I, of course spent countless hours doing research as well as care-giving.

I thank God that we may soon be able to do stemcell research in this country! I wish, though, that we could also research pesticide exposure. After all, pesticides work by destroying the insect's nervous system.

By the way, I know that some Baseball teams have really come out to support research. ProjectALS is a good example.

Sincerely, Kathryn Price, M.D.

I invite all readers of Goldsmith's article to read the article "ALS 'Miracle Drug' Dispute Resolved" that was printed in the (NJ) Record Tuesday, November 11th. Follow the link posted here.
http://www.northjersey.com/news/health/ALS_miracle_drug_dispute_resolved.html This should take you right to the article.

My dear friend, Dan, was diagnosed with ALS on August 21, 2007 at the age of 48. Dan is still alive and kicking and wants to participate in any way possible to help in this fight. Dan was an outstanding baseball player in high school and college and went on to become one of the best fast-pitch softball players in the state. The sport of baseball is very dear to the both of us. I am at a loss as to how to pursue this.

I lost my step father to this awful disease about 3 years ago and saw how he battled. I had the pleasure of meeting and playing with Michael Goldsmith at the Orioles Fantasy Camp. Micheal was an inspriation to all who attended the camp. I wish only the best for him in this battle.

Michael Goldsmith's inspiration for a Lou Gehrig/ALS day is a nobel idea worth making happen. As a father of a 32 year old daughter that has been diagnosed with ALS, hope needs to be kept alive and Michael has helped. We are working with our family to create good experiences and make dreams come alive and this can be another one we can accomplish. We all should encourage the major and minor leagues to support the idea. Work needs to be done to coordinate it and get the proceeds to a research focused organization. Michael has some ideas. Further posts will be needed to keep this idea alive.

I myself am living with ALS. I was diagnosed in 1997, so I know what you are going through. Hopefully as is mine, yours will be slow. I would like to see July 4th, 2009 be set as he said, EVERYONE give on that day. God Bless Everyone!

Reading this article made me realize how much research is driven by drug companies. I have had two members of my extended family die from ALS, both were on my mother's side but one was a cousin on my grandfathers side, and one a cousin on my grandmothers side. One died very young, in his 20's and though I was just a child I remember how horrifying it was to see a strapping young man turn into a shell of himself. And to make matters worse, his young wife was pregnant with their child. Gene lived long enought to see his son born, but just. My other cousin was in her 40's when ALS struck. She was the mother of 2 children. I must say I was outraged reading that the medical community considers ALS an "orphan" disease. I cannot even fathom how Mr Goldsmith felt hearing his diagnosis and then finding out that there is very little research being done on a cure or even treatment. Reading this has made me realize that I need to get out and help with raising awareness of this devistating disease. For my cousins and for all the other people battling for their lives. Bless you Michael Goldsmith

Well, it turns out that there are no e-mail addresses at MLB, but you can send "Fan Feedback" from the Contact Us link at MLB.com. Si I'm sending the link to all my friends and family with easy copy and paste verbiage that you just paste into the feedback box, then click submit. Basically I sent a brief request that MLB please consider JUly 4, 2009 as Lou Gehrig/ALS day and proposed that MLB donate to the foundation for every home run hit that day. Who knows, maybe if all the fans at every stadium in this great country gave just 1 dollar to fight this disease, it would be a start!

I lost my mother to ALS in April 2007. It is a devastating disease with no cure, no treatment and no hope for the patient. Our family is dedicated to eradicating this disease. We need to educate the public about ALS and garner support for finding a cure. Let's pressure the pharmaceutical companies to find a cure or at least a treatment for this terrible disease. We need to maintain a high profile about this disease so that it stays on the radar screen for doctors and researchers. Thanks for publishing this article.

I lost my mother to ALS in April 2007. It is a devastating disease with no cure, no treatment and no hope for the patient. Our family is dedicated to working to eradicate this terrible disease that took our wonderful mother. As a step to finding a cure, we need to educate the public about this disease. This call to action is vital to our cause. Thank you for publishing it.

We had been married 45 years when the love of my life receiver her diagnosis of ALS. Watching this physically strong person slowly lose the ability to control her body and to finally succumb to the terrible disease was almost unbearable. We have to find a cure for this disease.
Here in Minnesota a couple of former Twins are doing a lot for ALS. Kent Hrbek and Terry Steinbach, both of whom lost their fathers to ALS, had done much to fight this disease by sponsoring various charitable events among other things. There is also a big sign at the ballpark "Strike out ALS" that keeps track of strikeouts registered by home team pitchers. Donors pledge so much for each. But much more can be done. Perhaps now with the change in Washington more research with stem cells can be done and a treatment or cure found. Let's hope that once a treatment is found that it won't get lost for reasons described in the article by Sharon Begley "Where are the cures?" also in this issue Newsweek.

As I was reading this article, it occurred to me that, here we had the one of the greatest baseball players in history die of this disease, and MLB has never lifted a finger to raise awareness and money to help find a cure. When I finished the article I said to myself, with tears rolling down my cheeks, that something has to be done here. What can I do? And I thought, maybe I can start a grass roots e-mail campaign to the old man at MLB. Send it to all my e-mail friends and family with the letter attached, so all they have to do is forward the attachment to MLB and then forward the e-mail to their friends and family. I'd even include the link to the Newsweek article. So that's what I'm going to do. If you would like to be involved, please e-mail me at kyleedmt@lycos and put in the subject field, "ALS article". Thank you Mr. Goldsmith for your article and your strength. Take care my friend.

As I was reading this article, it occurred to me that, here we had the one of the greatest baseball players in history die of this disease, and MLB has never lifted a finger to raise awareness and money to help find a cure. When I finished the article I said to myself, with tears rolling down my cheeks, that something has to be done here. What can I do? And I thought, maybe I can start a grass roots e-mail campaign to the old man at MLB. Send it to all my e-mail friends and family with the letter attached, so all they have to do is forward the attachment to MLB and then forward the e-mail to their friends and family. I'd even include the link to the Newsweek article. So that's what I'm going to do. If you would like to be involved, please e-mail me at kyleedmt@lycos and put in the subject field, "ALS article". Thank you Mr. Goldsmith for your article and your strength. Take care my friend.